Pain Clinic 15th July 2014

I had another pain clinic appointment two days ago on 15th July that I was unsure of attending because I did not think I would gain anything by going but I'm glad that I did go that morning.  Dr Meiklejohn felt there were still some issues needing cleared up before he could start treating me after I told him about my recent disastrous ENT appointment.  I said to Dr M. I felt like a ping pong ball and I was getting no where. Dr M. said he would personally call the radiographer who read my MRI to go over it with a fine toothcomb and then report back to me within a few days and if he personally wasn't happy with the reading of the MRI he would arrange another one set up to look at certain areas.  For the first time I felt hopeful and in hearing this I asked if it would be possible to ask the radiologist to look specifically at the Sphenoid Sinus and the Pituitary Gland as I know they can cause problems.  My OGD Obsessive Googling Disorder had led me to looking at parts of the head that causes headaches.  Dr M. said this would not be a problem and pass on my information.


Whirring Wanderer

Alcohol is a No No

Since my symptoms started in Oct 2012 I have really struggled to have a sociable drink amongst friends and family.  When I do the noises and pressure in my head heightens and this happens with just two drinks.  I am not a big drinker anyway but I'd like to have more than two, I'm only 32 and should be allowed to enjoy myself once in a while.  Before my symptoms started I could enjoy a bottle of wine on a rare night out and have no side effects, I just can't do that now.  Last night I had two small vodkas and this morning I have a raging headache worse than my normal one that has been with me all this time, still left sided.  The whirring in my head is very loud and the pressure is making me feel off balance, it sounds as if I have a turbulent river in my head like there's a dam that the water can't get through .



All for now
Whirring Wanderer

June 2014 Update ENT appointment

I haven't managed to see my GP since my last post, routine appointments at my doctor's surgery are generally afternoons to see Dr Stevenson and I can only manage a Friday afternoon due to work and family.  However I have visited the dentist on Friday 23rd May and explained my symptoms and paid to have my teeth x-rayed with no abnormality found on left side so I know my teeth are not causing my symptoms.

I also had my ENT appointment on Tues 27th May.  I was expecting to see the same doctor Miss Shanks whom I seen last year as this was the named doctor on my appointment letter but she was no where to be seen.  I was happy to see another new doctor, maybe they would listen and try and find out the cause. The doctor was called Dr Mir.  My first impressions of him were very good, he introduced himself and asked why I was there so I explained I had been suffering from rhythmic tinnitus which is a whirring noise and headache (originally a wooshing noise) along with headache ear/neck pain and pressure since October 2012 and that more symptoms had developed including blur in my eye and veering to the left.  I handed him the list of symptoms I had typed up and printed out, he read the first 3 or 4 and sat it down.  He looked at me and said "lets start at the beginning I will look at you as a brand new patient, tell me how this all started"  I thought to myself, finally someone is going to take time and listen fully so I steadily explained that night in October 2012 with the wooshing sound then the headache the next morning, followed by neck pain and pressure, he seemed interested.  He decided to examine me and checked both ears, he found no problem, he had a glance up my nose and found no problem, he looked at the back of my throat and said he could see lymphatic tissue.  He asked if I had any throat infections which I haven't had recently but I explained I had one in December 2013 in which I had to have an antibiotic.  Dr Mir decided to use a camera to look up my nose and at the back of my throat, this wasn't pleasant but at least it was another step. The camera went up my right nostril very easily and I could feel the camera at the back of my throat in no time, next it was the left nostril and (Arghhhhhhhh) this was painful it seemed to get stuck and I let out a yelp eventually he pulled it back out and had another go manoeuvring it slowly and eventually I could feel it had reached the back of my throat.  Afterwards he said he noticed that there were three minor things that he had found that were not causing my symptoms but he said "I am only telling you just in case someone else further down the line tells you the same things, "1. you have adenoid tissue and 2. tonsil tissue on the left side, I am unsure if they have grown back or whether they were properly removed in the first instance and 3. you have a severe deviated septum leaning toward the left"  This might explain the mucous drainage I have on the left side occasionally.

I was slightly puzzled that the two previous ENT doctors had not mentioned anything about the leftover tissue as they had examined my throat, it seems some doctors will mention what they find and others won't.  Dr Mir continued to ask if I had my hearing checked recently so I explained it was tested last year but I felt my hearing was now becoming affected yet he decided not to test my hearing again as he felt it would be fine. 

The next thing Dr Mir suggests is that he will refer me back to the pain clinic, I was nearly in tears at this point and for the first time felt extremely angry.  I asked some questions about my symptoms stating the only reason I ask is that I have a huge amount of symptoms and I'm really suffering and can't exercise, the headache really wears me down as does the whirring noise. What happened next left me in shock.  He explained as a doctor he is the professional and he is learning all the time and continues to learn but it is up to the professionals and they decide if I have a good quality of life or not??? He continued "as a doctor when I go to see a doctor for a medical issue I am not allowed to question the doctor and I am not allowed to see what a doctor writes about me" did you know that? are your surprised by that, you as a patient you would think that as a doctor I am allowed to know everything that is on my notes, well I'm not".  I sat stunned with glazed eyes and felt as if I was back at primary school. I looked around and noticed the nurse was out the room.  Did I really hear an ENT doctor have a rant because I asked a question. When the nurse returned I plucked up some courage, looked him in the eye and said "there is something wrong with me, I am not suffering all these symptoms for nothing" and he said, "I agree there is probably something wrong but we just can't pin it down and the best plan is to refer you back to the pain clinic where they will sort some pain killer out and that will make you feel a whole lot better, you look a very positive person and will cope just fine, you might start to feel better and be able to exercise when you have painkillers"  I felt he was patronising me.  The appointment finished, it was a complete waste of time.  I still had the severe headache, ear pressure, neck pressure, blurring in my eye and my friends whoosh and whirr, I felt as if I was back at the start in October 2012.





Whirring Wanderer

Pain Clinic Appointment April 2014

I had my pain clinic appointment this week.  The doctor was Dr Boyd Meiklejohn, this was my first time meeting him.  He listened carefully to my symptoms however the referral from my GP Dr Stevenson was very basic and this was noted by the pain clinic doctor.  I explained how I was really struggling and was exhausted due to the constant pain and noise in my head, I told him how it all started with a baby ultrasound noise in my head/ear and the one thing that I had enjoyed all through my life was now non existent since all my symptoms started, I explained I could no longer exercise due the pressure in my head.  The doctor explained he could not treat me as he believes my head is not screaming pain for no reason and along with all the other symptoms more tests were needed to try and establish a diagnosis and then we could move forward with some treatment.  His suggestion is to attend the ENT appointment I have for May and then see what is suggested and then go back to him.  Before I left I explained I had visited the ENT last year and was told it was a pulled muscle and I also mentioned I had recently paid for a private ENT appointment, he said I should not be going down the route of paying for treatment as all the private doctors work in our NHS system.


All I want is to wake up one morning to the sound of silence with no headache/neckache and pressure. I can't live the rest of my life in this condition I feel I don't have much quality of life anymore, the pain I suffer is extreme and I have tried my hardest to forget it but it seeps through every minute of every day.  Doctor's do not seem interested that I have a severe headache they seem more focused on my ear.

I can't clean and tidy my home the way I used to, as soon as I exert myself and move my head and bend over to pick things up the pressure in my head and neck is extreme.

I am constantly exhausted, I could sleep during the day but obviously I can't, I am so mentally and physically drained that I lie on the living room floor after work, then I just manage to make the tea but I can't do anything else in the evening, I am completely floored, my head feels too heavy for my body.

My relationship with Mr Wanderer is suffering, I am sure he see's me as a hypochondriac because I have a constant headache but what I am suffering is a whole lot more than that.  I am slowly loosing myself, I am not my usual bubbly, upbeat self. I don't want to meet up with friends and family and I hate explaining to people I hear a sound in my head. I sometimes ask myself if I am imagining it all!

I am exhausted at work and loose concentration easily due to the pain and pressure, work takes my mind off the symptoms for a tiny amount of the day but eventually creep back through where I need to lay my head on my desk.



I can no longer concentrate on the hobbies that I love, no more crafts, card making and researching history its just too much of a struggle and the headache becomes unbearable.

I really enjoyed walking for 10 miles three times a week. Its 2 miles from my work to home and I am all over the place I keep staggering and veering to the left.  I can't jog, I can't do aerobic exercises I have tried numerous times and failed miserably because the pain and pressure is intense not to mention the sound in my head becomes louder and quicker.

My children are the ones who are suffering most, they don't have their normal fun loving mum who dances around the living room, who sings silly songs making the tea, who chases them up the stairs, who wants to take them shopping for new clothes, who supports them at their football, dancing and athletics, that is all almost gone, I am helpless yet I still try my hardest to do what I can.  Its a battle because my mind tells me I can do all of these things but my body tells me differently.

I know I am having a bit of a moan aren't I but some of the above things I have told doctor's at appointments but it doesn't seem to concern them.



Thanks for reading

Whirring Wanderer

Symptoms update! April 2014

I thought I would give an in depth list of my symptoms that I am suffering from at the moment.  I am listing everything I experience and I understand I may just be a little bit more aware of things going on in my body than before but I am listing in case anyone has anything similar. I have now been suffering with a headache and tinnitus for 18 months.  I do believe I possibly have pulsatile tinnitus but I can't say in truth that I absolutely do have it because Dr Dosumu has said I do not have it.  I have a pain clinic appointment next week and I have also received an appointment next month to go back to ENT at the local hospital.

Symptoms

• I have a constant whirring noise from within my head on the left side (remember this was originally my woosh noise that sounded like a baby ultrasound that quietened down to a whirr) I find the whirr noise very strange it resembles to me like a turbulence sound or very similar to a distant motorbike sitting out in the street, maybe even an old fridge burring away in the background
• As well as the whirring I have a constant low pitch electrical noise that I hear from the left side of my head(I refer to it as an old tv on standby)
• I have a constant dull headache left sided above the ear and diagonally above the ear towards the back of the head, I can press the area where it is sore and a loud buzzing noise is heard
• I have an ache & pressure feeling on the left temple area and this worsens when I bend forward, this is a newer symptom than the rest
• I have a dull constant headache on top of the head but still on left side, at times when I can't stand the headache and pressure I put weight on the top of my head with both my hands and I can hear better as the electrical and buzzing sounds are not so loud and the pressure is much less, as soon as I release the weight on my head the electrical/buzzing noise gets louder and the pressure returns
• I have pressure and a strange ache in my neck on my left side below the ear lobe, this is not sore to press or touch as it is deep within the neck, if I bend forward to pick anything up from the floor the pressure in my neck gets really bad and I get a loud heartbeat sound  (woosh woosh woosh)
• I have pressure and a deep ache felt inside the left ear behind the ear drum, feels as if something is pushing from the inside out, the ear creaks and pops and at times I have to pop them myself to relieve the pressure feeling 
• I developed pressure and a dull ache behind my left eye a few months after initial symptoms started, my eye creaks and squelches at times when touched, I noticed this originally when applying make-up. 
• I see haze lines and blurring from left eye, it can be lines similar to sun rays, water blotches and at times a spiders web, it becomes worse when I walk any distance but I mainly notice it looking at a plain background like the sky or a road, or a plain wall
• I occasionally have a pressure ache at the left side of the bridge of my nose at times specially when I'm walking and on an odd occasion a strange sensation over my cheek bone but only lasts for seconds 
• I experience a roar sensation every morning when standing as soon as I get out of bed I can hear it very clearly, the sensation seems as if its deep in my neck going into my head, it stops after a few seconds and is very similar to the baby ultrasound noise I hear when I bend forward or possibly sounds like a distant bass drum 
• When lying down in my bed at night it takes a while for my head to adjust and by this I mean my head hurts really bad on the left side but if I turn my head to lie on the right side the left side is just as sore it is as if my head doesn't like me to lie down and takes a while to adjust
• When I open my eyes in the morning and I move my head the pain on the left side is at its worst then it adjusts to a duller ache after I am up and about after my roar sensation

As you can see I have a fair amount of symptoms that I have tried my best to describe. Every doctor I have seen tries to separate the symptoms.  I was at the time still only 30 yrs old when the symptoms started but NO doctor seems concerned.  I have never listened to loud music nor have I ever used ear phones to listen to music so I know I haven't damaged my ears to cause tinnitus.  I did however paint my ceiling around a week before my symptoms started but three doctors told me to dismiss this as a coincidence and the ENT doctor last year said I had pulled a muscle due to the overhead painting. Other diagnosis's from doctors were ear infection, ear infection again, migraine, chronic headache, a virus, neuralgia, soft tissue damage, nerve damage, neuralgia again, nerve damage again, migraine again and more recently left side facial pain. MRI of head and neck was marked normal last year.

Please feel free to comment if you are suffering from similar.

Whirring Wanderer

Update March 2014 Private ENT Appointment

I had my private ENT appointment on Fri 14th Feb with Dr Marshall at Nuffield, Glasgow.  The doctor was very welcoming and pleasant although there was one massive problem, he had NOT received the referral from my GP, this was the second referral that had not been received.  Dr Marshall had no access to my medical notes and no access to the MRI previously carried out in 2013 six months after my symptoms had started.  I had to explain everything to Dr Marshall which I was happy to do, a fresh pair of ears always helps. " I was sitting watching television in Oct 2012 and noticed a woosh noise followed by a massive headache next morning, pain and pressure in my ear and neck then more symptoms then developed...." you get the picture I went through all of my symptoms.  He examined me and tried to separate a few of the symptoms but I had to interrupt and said the reason I was there because every other GP has done the same, I explained I had none of these symptoms before and it all stemmed from that one night of the woosh and headache.  I mentioned I had painted my ceiling before my symptoms started but felt that I was being rather stupid saying it but somehow I felt sure it was connected.  He decided that possibly my eye symptoms were not associated and it was a coincidence that I had developed a haze/spider web in that eye and a pressure feeling and that he was unsure why my eye creaked.  I was happy to put that aside if that made him feel better but what did he think caused my other symptoms?  Well he couldn't give me an answer and provided some recommendations for my GP to follow.   He wasn't too interested in the rhythm of my tinnitus and when I mentioned Pulsatile Tinnitus he quickly moved on in the conversation although I mentioned three times it was slightly worrying that it reminded me of a baby's ultrasound. He did examine me, looked at my throat, ear and nose and palpated inside my mouth and my neck. He said he had no idea what was causing my symptoms. Four days later I received my invoice of £200 and a diagnosis of LEFT SIDED FACIAL PAIN. Weirdly I assumed the area where my hair grows is called my head or my skull, the parts I pointed to and had conversions about were my head, I never mentioned anything about my face or facial pain!  The recommendations were to visit a dentist- already done, visit optician- already done and a range of blood tests- done they have all come back clear for antibodies and Vasculitis. A referral to a pain clinic was also recommended this has been followed through and I have received a questionnaire sheet and body map to fill in but there was little room on the head of the body map to mark and explain, so the picture attached is what I printed out and included when I returned my questionnaire, I also gave a full list of my symptoms.  I marked an X where I have the constant pain and pressure and a O where I felt the pressure and woosh/whirr noise.  Do I feel stupid doing this? Yes I absolutely do but as no one is listening, I felt I had to. I am the one suffering and have suffered since October 2012 and no one seems interested in trying to help me.  I work hard and pay taxes the same as everyone else, I don't abuse my body with drugs, I don't smoke, I have an occasional glass of wine which I now struggle with as my head doesn't like it and the noise in my head gets really loud, I am not overweight and do not cause a burden on our NHS system yet the NHS dishes out Methadone, Gastric Bands, Nicotine patches and has to carry out numerous heart operations to unclog peoples arteries as they eat nothing but high fat foods, is the system really fair for people like myself?  I will await my pain clinic appointment.

Thanks for reading Whirring Wanderer

The story so far! December 2013/January 2014

Symptoms are still present, I finished the 16 days of Nasodren and no change.  Let me take you back to last year to pick up the rest of my story taken from my diary where I had been to the GP in July 2013 and whereby they told me they would not investigate any more.  I decided to move to a new GP surgery where it would be smaller and have fewer doctors and I wanted to be treated as a brand new patient and for them to make a diagnosis of their own.  I joined in August 2013 and had my new patient visit with the nurse on the 23rd.  It took me a few weeks to pluck up the courage to visit the actual doctor as I felt I would be treated the same as before and not believed that my symptoms were real and need investigating.  It also gave me time to carry out more research on the internet about my symptoms. I now believed I had Pulsatile Tinnitus and arranged my first GP appointment on 24th September 2013 with Dr Dosumu.  Dr Do. listened to all my symptoms and decided I had neuralgia caused by nerve damage and that the tinnitus and other symptoms were non related.  She was reading from the computer screen and added that my previous doctor had noted I had Neuralgia.  I questioned this and explained that my woosh now whirr had started first, followed by headache the very next morning, I also asked about the pressure I had in my head, ear and neck because it was all one sided but this was dismissed and labelled as neuralgia. Dr Do. decided to explain what neuralgia was but I interrupted stating I was very well aware of what neuralgia was. I was starting to feel uptight at this point as everything I said was dismissed, I felt the more questions I asked the more rude and dismissive Dr Do. was being. I said I had come to the surgery as a new patient because my previous one did not seem to listen to me.  I continued to question the diagnosis on why Neuralgia would cause the sound in my head. I was then arrogantly told I did not have pulsatile tinnitus when I mentioned it. I had offered that I believed the noise I am hearing is pulsatile tinnitus by researching my symptoms recently. Dr Do. said that I had tinnitus but certainly did not have pulsatile tinnitus. Dr Do. decided the best course of action was to give a prescription for Gabapentin for the headache that I was to take for 3-4 weeks and then arrange a follow up appointment.  I said I would like referred to see someone about the headache because it was not normal for me and for the fact it had continued for so long, she said if nothing had changed at the follow up appointment I could be referred to a neurologist if I brought a name for referral.  I was slightly puzzled by this and asked you mean private? she said yes because everything serious had been ruled out by my previous doctor's surgery and as I'd had a previous MRI scan marked normal, they would see no reason to refer me.  She said I had been fully investigated and nothing was wrong with me. I came away feeling like I was being judged feeling like I'd made the whole thing up, so much so that I was now being refused investigations. 

This has followed me like a bad smell from the previous GP surgery where I was told they would no longer investigate my symptoms. I am unsure why every GP I have seen continues to separate all the symptoms that I am experiencing when most of them started at the same time.  I took the prescribed Gabapentin for 3 weeks and it did nothing apart from make the pain in my head feel 3D, I felt as if the pain was jumping out the side of my head and it made me feel very sleepy, spaced out and my eyes were stinging and bloodshot. I also felt really off balance more so than normal.  I stopped the prescription after 3 full weeks, I never made another GP appointment because I felt it would be a waste of time and I was sure Doctor's were labelling me as a hypochondriac and I'd be put in a straight jacket anytime soon.  The new doctor's (Dr Do) attitude was very defensive and to the point arrogant.  I could not put myself through meeting her again.  She did not treat me as a new patient and her diagnosis was not made of her own accord she read from the computer screen.

Before I knew it Christmas was nearly upon us.  A few days before Christmas I noticed I had a bit of a sore throat on the left side and I woke on Christmas morning to find I could hardly speak as my throat was so swollen and I started wheezing.  I got an emergency appointment at the GP surgery on 27th Dec 2013 I never did catch his name. I had a throat infection and was given a prescription for Penicillin for 7 days.  I think my body is run down as I normally don't take anything. Mr Wanderer was with me as I felt terribly off balance.  Mr Wanderer decided to tell this GP all about my on going symptoms since Oct 2012 and that nothing was being done, the GP decided to explain all about neuralgia and nerve damage, this was another doctor reading from the computer screen!!!  I had enough and asked to be referred to a private ENT Dr Marshall who I had found on the internet because of the on going sound I was hearing in my head and if I had no joy there I would then look at a private Neurologist as suggested by Dr Dosumu. The GP said the referral would be done and referred that day, he had all the details up on his screen.  As of yesterday the 22nd Jan 2014 the referral still had not been done as I found when I called the surgery.  Today 23rd Jan 2014 I seen Dr Stevenson so that he could write up the referral while I was there.  It transpires that the practice/surgery has two GP's Dr Stevenson & Dr Dosumu and at my previous appointment I had been unlucky to see the locum that simply forgot to do the referral I asked for.  I am glad I met Dr Stevenson as I preferred him over Dr Dosumu.  Dr St. apologised profusely and typed the referral while I was there sat with him and he then walked me through to the reception so I could see him giving it to the reception staff to send.  After explaining all my symptoms Dr St. believes I am suffering from migraines.  I just nodded and never expressed the feeling boiling in my belly, about to explode a wrath of expletive words.  I had already told Dr St. that no one was putting my symptoms together and every GP I had seen was trying to separate them.  I understand that I am new to the surgery but surely it doesn't take Einstein to realise I am suffering and have gone there to get answers and treatment.  I will await my appointment to see the private ENT doctor.


Whirring Wanderer